She ate one six ounce container of Yogurt for breakfast. That was the biggest breakfast in four days. Then she didn’t even eat the ice cream pie for supper.

I made the mistake of taking her blood pressure when she was lying in the bed this morning. I thought it would be up some since I restarted the Midodrine yesterday to see if we can reduce the fainting spells. Her BP measured 280/130. That is frighteningly high. Here is the kicker: twenty minutes later, while sitting at the table I measured it again. It was 95/75. In the mid-afternoon, while she was lying down, I took it again. It was 245/115.

Since we have few options, I plan to continue the Midodrine at some level. She has still been fainting, in fact there is a new twist. After being out for a while, twice shen stiffen like a board in a mild seizure-like event. She wouldn’t bend — in the middle or at the need. She was stretched out full length, locked in that position. It happened once when trying to get her back into bed. It happened a second time while on the toilet stool, dealing with a messy BM. The good news is neither did I become frustrated or get upset. I just laughed. I waited until the stiffness seemed to soften a bit and just picked her up and repositioned her.

I am tired of being upset about what is happening. It is time to just deal with it. I am grateful that our Daughter, Lisa, and Granddaughters, Abigail (7) and Ashlyn (5) arrived late in the afternoon. It has been good to see the girls and have Lisa to talk with. Just as Son Micah got to experience the challenge of bathroom duties on Monday, Lisa got to experience that challenge today. Mary Ann responded a bit a couple of times to Lisa. Whether she is able to respond or not, it is clearly meaningful for Mary Ann to have them here.

I did get to talk with someone on the Staff at the Senior Diagnostics Center at a local hosptial today. The person was a bit abrupt and on hearing that Mary Ann had been diagnosed with Lewy Body Dementia two or three years ago, she responded that LBD folks go quickly. While I do not wish to ignore the harsh reality of our situation, it was no fun to have it tossed in my face in such a matter of fact way. I explained the situation, adding that her vitals are still pretty good. She did not dismiss us out of hand, but seemed genuine in saying that she would check with the doctor and call us back tomorrow.

I have very low expectations of any meaningful option emerging when she calls back. There are some hints that the Midodrine raising her BP is allowing a little more mobility — at least for a few moments before fainting.

It was good to have an extra set of hands and arms when the heavy lifing came. Lisa was a CNA for some years while in high school. She ended up Administrator of a large multilayers facility for the older population. She has been parenting full time since the girls were born.

Tomorrow evening, Son Micah will join us as we look at the rapid developments these last few days.

There is more that I could say, but I am struggling to keep my eyes open. It is time to sleep.

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I am not sure either of us would have survived another night of constant hallucinations. She slept soundly last night. This was my early morning, but it still felt good to have almost six hours of sleep.

Wednesdays are often very active days in our household. Mary Ann slept through my time in the Spiritual Formation Group that meets here. I got full advantage of another thought-provoking and nurturing time focused on the Presence of God in our lives. The conversation was stimulating, meaningful and very engaging.

Bath Aide Zandra came shortly before the group time was concluded. She had to awaken Mary Ann to do the morning prep tasks. While Zandra was doing her task and our group was concluding, Parish Nurse Margaret came to spend some time with Mary Ann.

I chose to do the breakfast and pills with Mary Ann to maintain our routine. Then as Margaret finished with Mary Ann’s toast, I started preparing for Kristie’s arrival. Kristie does the monthly thorough cleaning, since I am all but useless at the task of house cleaning, especially the abhorrent task of dusting. Kristie arrived just as I started the task of putting things away so that she could get to as many uncluttered surfaces as possible.

While Margaret stayed with Mary Ann and Kristie cleaned, I got a break to go and get more birdseed. The little piggies are devouring seed at a phenomenal rate. That is my part of the deal. Their part is to provide us with hours of entertainment. Yes, my feeding them is self-serving — but they do get something out of the deal. Today is another rainy day, bringing lots of bird activity. Unfortunately, there is evidence that the raccoon(s) have returned. Unless a flock of birds came during the night and devoured a couple of pounds of seed, the cute but annoying little beasts are back. Rather than messing with trapping, I plan to bring the feeders they bother into the house each night. They can just argue with the possum over the seed in the platform feeder by the waterfall area.

Shortly after 1pm, a couple of folks came to talk about scheduling some paid time with Mary Ann on a regular basis. This option came as a referral by Hospice Social Worker Kristin. These folks are more reasonable than the Agency we use some times, and all of them are either licensed CNA’s or LPN’s who have had lots of experience with folks with Mary Ann’s sort of problems. Glenna had served someone with Lewy Body Dementia and reviewed information about it on the Internet before coming to meet with us today. We will begin with a Monday time the second week in June and just see what seems to be the most helpful. She said that between her and three others like her, we should be able to get help on fairly short notice if needed.

Then at 2pm Volunteer Clarene came to be with Mary Ann for a couple of hours this afternoon. At the same time former Parishioner Jay came by with a Latte for Mary Ann and coffee for me. After we all talked for quite a while as Mary Ann was napping, Jay and I headed to PT’s just for some relaxed conversation (and more coffee).

Mary Ann spent a good deal of time today resting her head on the table. When there was interaction, there seemed to be minimal evidence of hallucinating. She napped in bed for a time this afternoon. She was up for a bit when Clarene was with her and had a little more of the pizza I had gotten her for lunch.

After I returned we sat up together for a while, but she soon wanted to get changed for bed and lie down. As always I don’t really know what to expect as to how the night will go.

As to the increase in the Seroquel, last night did not confirm that in Mary Ann’s case it increases hallucinations instead of reducing them. The last increase many weeks ago produced a couple of bad days followed by some good days. I would like for this increase now to produce some good days. I am not even willing to hope that it will be so. That sort of hope just sets me up for disappointment. It is possible there will be some better days, but it doesn’t really seem very likely to me — possible, but not likely, that is tonight’s mantra.

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Mary Ann slept reasonably well after settling last night. She got up and had breakfast, but afterward opted to remain in her pajamas. After a time, she just started fainting in her chair. We managed a trip to the bathroom once, but the second time she fainted in the transfer chair before I could get her on the stool. She just needed to get back in bed.

While she slept, I did a bunch of simple household chores. It struck me how much effort is necessary just to do the most basic tasks to maintain a household. That is hardly news to anyone who has had responsibility for those basic tasks. Having grown up in a household in which Dad did outside stuff and Mom did inside stuff, it has taken a while for me to catch on.

I did manage some time watching the large screen nature show at the back of the house. I need to correct the pronouns in my last post. That Oriole is “she” not “he.” I should have known since she was more yellow than I expected of a Baltimore Oriole. Mr. Oriole appeared at the waterfall this morning. He has not ventured to the jelly yet, at least when I have been watching. Mrs. Oriole has spent a number of times there today.

Mary Ann got up in the early to mid-afternoon. Given the choice of waiting an hour for me to make a bigger meal or having a sandwich then, she opted for ice cream. You will note that ice cream was not one of the options I suggested. We both had some ice cream. I put the baked potatoes in the oven, and after about an hour, I George Foremanned a couple of pieces of sirloin from Omaha Steaks I had marinating in the fridge and steamed a bunch of Asparagus. By the way, I absolutely HATE cleaning the George Foreman Grill!

After eating, Mary Ann watched some television. Daughter Lisa phoned to wish Mary Ann a happy Mother’s Day and report that some items produced by our Granddaughters would be coming later. Since we had eaten so late, it was not long before it was time to go to the Evening Service at church. Mary Ann had forgotten that it was Sunday. I got changed and we headed over to the Service.

Shortly after we got back, Mary Ann was ready to go to bed. It is a very cool and gray evening. I have stepped outside a few times just to take it in. I prefer the days when Mary Ann is subdued and sleeps a lot to the ones when she is so intense and streaming hallucinations, delusions and dreams confused with reality. At the same time, on occasion when she is sleeping, there are pensive moments during which I get a glimpse of what it might feel like to be alone. There are lots and lots of people who have faced that challenge before me. As any will testify, that there are others does not lessen the impact when it is you.

I choose not to remain long in the pensive times. We live in a state of intentional denial. We have enough to deal with in the present. We will deal with future possibilities when they become the present. For now, we have each other. That is our reality. It is enough.

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Today, we were pretty much home bound. I had hoped we could get out, but it just didn’t materialize. As I reflect on the day, I realize how much activity comes to us instead of our going somewhere else to find it.

There were no Volunteers scheduled today, so unlike many Wednesdays, the option to go out on my own was not available. Mary Ann was tired today and napped at times that kept us here. We still haven’t made that trip to the grocery I have been trying to get in for a number of days. Since food has been brought to us recently, we are eating well. We are on the last package of Mary Ann’s pads (disposable underwear), so tomorrow will have to include a trip to the store.

This morning began with the Spiritual formation group that meets here. If those folks were not willing or able to come here, I would simply have no Spiritual Formation Group experience regularly. It is both garbage day and lawn maintenance day on Wednesdays in our subdivision. We have recently incorporated the garbage truck sounds into our spirituality as a metaphor for ridding ourselves of unwanted garbage in our lives — letting go of things that just bog us down and clog our spiritual arteries.

As I was setting up the deck in anticipation of the arrival of the group members, there was an aerial attack on the pair of Mallards in the back yard by another pair. There was much squawking as the dive bombing hen chased off and flew after the hen already on the tarmac. The same thing happened with the drakes, with the addition of their fly by almost clipping my ear.

The lawn crew provided weed-eating next to the deck as we had the concluding prayer. I am sure that we will come up with some sort of metaphoric understanding of to the mowing and weed eating that will incorporate those sights and sounds into our Spiritual Formation.

Again, during the group time Bath Aide Zandra came to the house to provide friendship and help as Mary Ann with through her morning regimen.

By the time the Group was done, Landscaping Tech Sheila had arrived and begun working on our disheveled garden areas. It is at this point that another venture into bringing beauty into our lives is beginning. Sheila has presented and then adapted a plan intended to provide more beautiful surroundings at the side and front of the house. Her original proposal was elegant and well-planned. Mary Ann and I redirected the project.

Shortly after moving in we had added a berm in the space between our town home and the one next to us in a spot that was in full view when standing at the sink in the kitchen. The first plan would have returned that spot to sod. After thinking about it for a while, I realized that we were more concerned about what we see from inside the house than what people see when looking at it from the street. Now that I am at the sink an inordinate amount of time each day, I am especially in need of having color and activity and growth and change to stimulate my visual cortex. We can’t get to lots of beautiful places away from the house, so we are bringing them to the house. That is what all the changes at the back of the house were about.

Stacey came by later today to take the final measurements for the sun room blinds for privacy at night. That project continues. Sheila is doing some work in a small back area at the side of the deck to fill out the setting. The leaves are now out on the trees in behind and beside the waterfall and in the neighbors’ back yards. The area is now almost completely green and secluded.

Mary Ann’s day was not her best. She fainted quite a bit this morning and ended up back in bed for at least a couple of hours. At a late lunch there were a couple of falls without damage to Mary Ann, but our relationship was stressed some in response to them. From her perspective, she was just doing what she did automatically before the disease took its toll. From my perspective, she was making choices (twice within minutes of one another) that unnecessarily complicated our lives with substantial clean up and the physical demands of getting her off the floor.

I spent the rest of the time she has been awake sitting a very few feet from her, ready to jump each time she stood up. Bringing activity and stimulation into our immediate environment helps especially on days like today when even stepping outside is limited.

Hallucinations have continued at various levels of intensity. We seem to be having less and less of the good, lucid times. A few minutes ago when I saw her moving in bed, I went in to help her turn so that she is facing the opposite direction. She said that she guessed we were at the first table. There were, of course, people here, but she wasn’t sure if they were tables for playing cards or what.

I am not sure what way we are swinging at the moment. I don’t know if there will be lots of daytime sleeping tomorrow, or much sleeping tonight,. I don’t know if there will be some calm and lucidity tomorrow or hyperactive delusion/hallucination/dreaming going on. I will find out.

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Are you at least a little curious? Can you picture just turned 67 year old Pastor Pete Kiteboarding at Lake Perry on a Sunday morning? This retirement is really something!

An old saying about a snowball’s chance in Hell comes to mind as the caption to that picture. Since we attend the Evening Service at the church from which I retired, and since the tradition of Volunteers spending time with Mary Ann on Sunday morning still continues to a certain extent, I have opted to use Sunday morning as a mini-retreat time.

Most often I head up to the lake to just sit in the van and read, walk, meditate, watch for birds and other wildlife, and just spend time in the moment, experiencing whatever it brings.

This morning it brought a very chilly and very strong wind. I opened the window on the van, covered myself with a jacket and just celebrated the power and the sound of the wind. Last night was a difficult one. Mary Ann was up at least four to five times an hour until almost 4am. Gratefully, at least she slept the next four hours.

I was glad that a Volunteer was scheduled this morning. Volunteer Jan and her husband, Tim, are in our time in life, so we have lots in common. Jan does a treatment on her finger nails that Mary Ann appreciates. They just enjoy talking.

As soon as Jan came, I headed for the lake. When I was passing through some fields after the turn off on the way to the dam area, a juvenile American Bald Eagle and an American Crow took off from on of those fields not far from the van as I passed by. I suspect that the two of them had had some sort of disagreement that landed them there.

Just as I was driving off after a couple of hours there, an Adult American Bald Eagle treated me to a fly over, then circled for a couple of minutes. In between the two Eagle encounters, I did a lot of devotional reading. I have needed as much grounding as I could find the last day or so. The three or four different articles from journal and online Spiritual Formation sources helped draw me back to a better place. They were all thoughtful and very well-written. Each helped reframe reality in terms of something that does not depend on external circumstances to create health and well-being. There was nothing there that I don’t already know. It is a matter of bringing the truth into a more central place from which it can generate renewal. I was also refreshed by Pastor Jim’s message at the Service tonight.

After a substantial time with the reading and meditation, a car came blasting by me in the parking lot and landed in the corner of the lot. Two young men jumped out and started unloading cloth bags and containers and equipment and spread it all around the car and in the nearby grass. It didn’t take long to figure out what was going on. It probably took a half hour from arriving in the lot to heading into the water. Only one of the two actually kiteboarded. He went back and forth a number of times right by the shore. He was not out on the water for as long a time as they spent getting the equipment ready and putting on all the paraphernalia.

We had a good meal after returning home, Lisa’s meatloaf, baked potatoes and asparagus. Even though she had been up so much last night, Mary Ann never took a nap today. She just refused to do so. She didn’t really even nap with her head down on the table. The fare on the television was no better than yesterday. She was up and down quite a bit. I just hung close to her.

The Evening Service got us out and with people for a bit. There was a stop at Sheridan’s for Concretes (chocolate with pecans) to take home and eat. I haven’t yet been able to bring myself to head into Baskin & Robbins after the nasty treatment the last time we were in (see post from April 15). When we are in the mood for the flavors of ice cream that we favor there, I will not let my anger interfere with the pleasure of enjoying a couple of scoops. Life is short.

Mary Ann has gone to bed and appears to be sleeping. I am counting on nothing, however. One sleepless night does not guarantee that the next one will be a restful one. Tomorrow evening Volunteer Tamara came by late today to pick up some dishes so that she can bring us a meal tomorrow to put in the oven for supper. We are looking forward to that treat.

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It seems odd that a simple day of getting up, doing stuff and going to bed could be so great. We both had an appropriate number of hours of sleep. We got up and a reasonable hour. Mary Ann seemed to be connected to the realities of the day.

Not too long after breakfast, Hospice Aide Sonya came to do Mary Ann’s shower and hair. It was almost comical to hear Sonya describe it. Mary Ann had a couple of monumental deposits to make during Sonya’s time with her. Sonya described in great detail the nature of the deposits. Her description reminded me of the latest round of Subway commercials. I will leave the rest to your imagination. I was grateful on a couple of counts. One, Sonya got to share the joy of waste management duty, sparing me the task. Two, it was a much needed basic bodily function that will help Mary Ann function better and feel better.

After that, we watched television together for a while. I made trips to the computer to read emails. I also got started on a couple of loads of wash. Mary Ann ate a pretty substantial lunch, then we headed out in the car. The local Asparagus is coming on, so we headed to Meier’s market to pick up a few pounds. I practically live on it when the locally grown crop is available.

After that we headed to Flowers by Bill. Daughter-in-law Becky made a deal with me, trading the benefit of my cell phone on their account for me getting Mary Ann fresh flowers periodically. This is the second time I have done it, and both times I have been surprised at the spectacular bouquets I have received. I have gone in each time and told them what I am doing. I have asked for whatever they can give me for ten dollars. Each time they have come out with an arm load of beautiful flowers. This time there are daisy mums of many different colors (20 open blossoms), carnations (9 open blossoms), alstermaria or peruvian lilies (3 stems each with multiple blossoms on each stem), and a huge yellow rose. The bouquet has filled the living room with color.

We made an obligatory stop at Dairy Queen, since it is still buy one Blizzard and get the second one for 25 cents week. I guess today could be designated Flower Day. Shortly after we got back home, Volunteer Maureen drove up. She delivered birthday presents for Mary Ann and me. One is a vining geranium in a hanging basket, providing color just outside our kitchen window (where I now spend an inordinate amount of time each day). The other is a Gerber Daisy sporting lots of large yellow blossoms. Maureen remembered that yellow flowers are a favorite of Mary Ann. That now sits on the deck just outside a glass panel in full view of Mary Ann from her chair.

At supper time I actually made a sort of normal meal – a rarity. I browned cut up ring sausage in olive oil with lots of onions. Then a ton of the fresh Asparagus went into a pan to be steamed. At the market there were some small white potatoes that the owner had kept back for the family last fall. They had some left and offered them for sale. I steamed them with salt, dried onions and parsley, drained the water off and covered them with butter (margarine). I was surprised at how much of the garden flavor they had retained. Mary Ann apparently approved since she cleaned her plate of every speck of food I put there. That almost never happens.

After finishing the couple of loads of wash and cleaning the pots and pans from supper, I decided that if there is some sort of certification as a domestic engineer to be had, I am now qualified.

I plan to spend a little time tonight with a newly obtained book on St. Patrick’s Breastplate. Each chapter is a reflection on one of the phrases in the prayer. YouTube will provide sung versions of the prayer to give it fuller expression.

I will accept today as the gift of a kind of normal day that most would find boring, to be taken for granted. To me it is a refreshing encounter with something to be cherished, never to be taken for granted but instead savored.

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It started again last night. This morning she was up at about 6am and hopelessly confused. It was 4pm pill time (there never has been such a thing); she needed to make hamburger BBQ; those were the most lucid of the first words this morning.

I got her back in bed so that I could take a shower and get dressed to prepare for the 7:30am Spiritual Formation group that meets at our house. As soon as I got in the shower, she started yelling for me. I got out to see what had happened, and she just wanted to know where I was. The shower is in the bathroom right next to her bed.

Moments later, she needed to go to the bathroom. She had been to the bathroom just before I went in to take a shower. It was tough just to get the preparations in for the Wednesday morning group, since she was in her streaming delusion/dream/hallucination mode.

I have been especially tired the last few days. Today, I have not felt good at all. Here is where the grateful dimension kicks in. Volunteer Maureen arrived at 7:25am to spend a couple of hours with Mary Ann. as always, she had a meal for the freezer, a couple dozen homemade cookies, Blueberry muffins and three very tasty Macaroons.

Maureen gave Mary Ann her yogurt and a muffin and kept her occupied while I spent a couple of very spiritually therapeutic couple of hours in the Spiritual Formation group on the back deck.

Bath Aide Zandra came and took Mary Ann through her morning prep for the day. Parish Nurse Margaret arrived just as Maureen was due to leave. Margaret spent the next two hours with Mary Ann while I did some morning chores. During that time I gave Mary Ann her pills. Margaret checked Mary Ann’s blood pressure (122/80) and her pulse (60). I was reassured by the normal pulse after yesterday’s unusually rapid heart beat. The BP would be great for anyone else, but low for her. She had already done some fainting this morning.

Mary Ann settled into putting her head down on the table in front of her as she sat in her spot in front of the television. During this same time, Kristie, who does the monthly cleaning, came and started her work. Part of my chores on this day is to do the pre-Kristie cleaning up so that she can get to all the places that need cleaning.

I headed off for a short time to squeeze in a couple of errands. At 11:30am Volunteer Doris arrived. I got Mary Ann’s lunch. She could hardly keep her head up. Her nose was almost touching the plate. She finally let me help get the food to her mouth. She did not want to go in and lie down, so I moved her to her spot where she resumed resting with her head down. I remained at the house, since Doris needs help moving Mary Ann. After a while I was able to get Mary Ann to lie down in bed for a nap. I set up the monitor so that Doris could let me know if help was needed. That allowed me to read emails for a while, do a couple of household tasks and sit for a few moments on the deck.

Then Tom from our pest control service arrived to do his quarterly task. While he was here Volunteer Scheduler Mary came to spend two and a half hours with Mary Ann. She brought Lasagna and bread for supper, along with shortcake, strawberries and ice cream. There was also a large container of Mary Ann’s favorite, Ambrosia Salad. During the time Mary was here, we spent some time talking about her ministry as a trained (two years) Lay Assistant at the congregation from which I retired. I spent some time on the deck and then headed out to sit at Cedarcrest and try to nap while sitting in the van.

After I returned and Mary left, Mary Ann was still sleeping. Neighbor, good friend and former Parishioner Ann stopped by to see the new sun room and waterfall as well as visit for a bit. After Ann left, I decided to try to nap a bit myself. That lasted only a few minutes before Mary Ann finally stirred.

It was another very busy Wednesday. I am profoundly grateful for so many Volunteers spending time with Mary Ann today. Any times I interacted with her, she was still in the streaming hallucination/delusion/dream mode. It helped to have others here. Since she slept so much, it would have been doable, but it was a comfort not to be alone in the task. I had a chance to enjoy talking with those who came, making my day better. I need and love times of solitude, but I need human interaction just as much. The Mallards came by for a while today also, filling my need for entertaining wildlife.

We had the wonderful lasagna meal and dessert. I spent time just sitting with Mary Ann as she watched an hour or two of television. Then she decided to go to bed. After a day of sleeping, I am not sure it will be a very restful night, but I certainly need one. I absolutely cannot allow whatever it is that is making me feel bad physically develop into anything that interferes with the functioning of our system. The only power I have is to try to get some rest. Otherwise, I am fully aware that I have very little to say about what does or does not develop.

I am trying to finish this earlier than usual tonight, so that I can allow more time for rest. How much rest I actually get will depend on how Mary Ann’s night goes.

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